Parenting developmentally disabled children will always be a special challenge. It need not be a nightmare. In addition to meeting the usual parenting challenges, parents of disabled children face a gauntlet of added obstacles that can try the resolve and resources of even the strongest families. But navigating the complex
medical, educational, occupational, and social issues can be made easier with the right information.

Monday, October 31, 2005

Temperamental mismatch is where one person's temperment is so different from another person's as to cause conflict. This can happen between parents and their complex children as well.

Billy Ray and I experience a temperamental mismatch - I am a "Messie" and he needs order.

A "Messie" is someone who struggles with disorganization. The term comes from an organization founded by Sandra Felton, Author of The Messies Manual and many other books on organization, Messies Anonymous (www.Messies.com).

A Messie can be quite successful careerwise but disorganized in their personal life. Ms. Felton describes several types of Messies in her books. I am a perfectionist messie. An example of this is that if I go to the linen closet or dresser drawer and find it disorganized I feel compelled to rearrange it before putting away clean clothes. I am also distractable so after I pull everything out to rearrange it I may well get distracted and leave a mess. I try to do too much so have lots of unfinished projects around the house.

When Billy Ray came to my late husband, Raymond and me, at 15 months old with the diagnosis of Down Syndrome, my messiness was not an issue for him. I am first of all a people person and he was my priority. We did all kinds of fun things together which helped him to thrive developmentally. He now has the dual diagnosis of Down Syndrome-Autism plus ADHD and bipolar.

He needs things to be in the same order all the time. For example, he is totally used to unfinished projects near my recliner chair and my desktop. However, he can't tolerate other things out of place. If I leave the ironning board up or something out of place he is likely to throw it accross the room because it disturbs him so much.

On the other hand, Billy Ray contributes to my messiness substantially. Just a few examples are:

The biggest issue is sleep deprivation. When you are tired it is hard to stay focused on keeping the house organized. There is one medication (of the many tried) that will work for a few months at a time before he builds up tolerance to it and has to stop taking it for a few months. I have noticed that during the months he is sleeping better I do better with the house.

He requires one to one attention at all times. When we don't have support staff here with him I need to be in view or close ear shot of him all the time. If housework is to be done he must co-operate with the task or it must be able to be done close to him.

He adds to my distractability by his constant interruptions.

Noises bother him so I can't use certain appliances when he is home.

Sandra Felton teaches "baby steps". This is vital when you have a complex child. I am discovering that when I am in the kitchen, I can sweep the kitchen floor in the time it takes for his microwave popcorn to finish. We involve Billy Ray in the process as much as possible, planning activities that he will do with his support staff and with me to help around the house.

It is a work in progress. I will share our progress with you from time to time.

Sunday, October 30, 2005

Where is it written that when the kids get sick Mom (or Dad) will drop everything to take care of them. When Mom or Dad get sick parenting doesn't just stop. This is especially true with a complex special needs child. Schedules must be kept. There is no room for "I don't feel like doing that today."If I have a migraine Billy Ray still wants to have his book read to him. It seems to me that his normal 20 questions become 40 questions with decreased gap in between questions during those times when I need questions.To you my internet buddies I can just say sorry for the short post this morning while I fight my fall cold. Billy Ray will not accept that explanation so I'm off to answer all his questions and try to maintain his routine while I blow my nose a gadzillion times.Until tomorrow,Peggy Louwww.parentingyourcomplexchild.comwww.lighthouseparents.com

Saturday, October 29, 2005

The use of medication for behavior management of special needs children and adults has grown substantially over the years. Some parents swear by it and some hate it. I can see that it has given Billy Ray some years but that his life has been changed negatively because of medications too.

Billy Ray has multiple diagnoses including but not limited to Down Syndrome, Autism, Bipolar, and ADHD. Temple Grandin told me that if a child is not diagnosed with Autism by 3 it isn't usually considered Autism. I know realize that Billy Ray had more mild Autism by then. I never reported things like intolerance for noise especialy fireworks, because I didn't understand they weren't a part of his Down Syndrome. Had I given the developmental pediatrician the right information the diagnosis may have come sooner.

At 5 Billy Ray began being treated for ADHD and at 7 Bipolar. The balancing act of that treatment has been a nightmere of the worse kind. He quickly builds up a tolerance for medications so doseages have to be adjusted regularly.

Just before his 14th birthday the medication for ADHD was changed because the school teacher complained of hyperactivity at school though we were not experiencing problems at home at that time. Two months later the mood stabilizer he used for bipolar (an anti seizure med) began negatively impacting his blood count and had to be weaned. The psychiatrist weaned it very carefully and slowly. The day following his last partial dose Billy Ray experienced a series of severe seizures believed to have been caused by the medication he was using for ADHD.

The first two months following seizures he was alternating between zombie and wild man. Our quiet, albeit active, little boy who was high functioning could now become aggressive and destructive. The pediatrician told me that most kids who experience seizures like this will return to what was normal for them before the seizures within six months. It is clear now that the little boy I put on the school bus that February 1997 morning (he had the seizures at school) is never coming back to us.

The same medication believed to have caused the seizures in Billy Ray has been credited by a highly successful Autistic lady has helping her substantially. For that reason I don't name the medication here or in my book. The reality is it changed lives some for the better and in Billy Ray's case for worse. The risk is there and sometimes the child loses the gamble.

Following the seizures that day he was put on another anti seizure. He does not have an ongoing seizure problem but he uses it for mood stabilization. It has worked when nothing else did. We have tried to change it a few times but nothing works better. However, side effects of that can be pancreatitius and diabetes. As I have been sharing we are now dealing with diabetes. Next week he will have a catscan to determine the pancreatitius next week. We know that his pancreas has fluid and is enlarged but that could have happened when he experienced Appenditius this summer. It seems to me that the same drug that has given him more quality in his life has now turned on him.

To medicate or not to medicate... that is the question that haunts parents. Would I do it again knowing what I know now. Probably not.

I didn't learn about Autism Research Institute and Dr. Bernard Rimland until after Billy Ray experienced the seizures and had symptoms of severe Autism. If I had known earlier I would have tried diet and nutritional supplements first. When I learned of the nutritional problems many people with Autism and other disabilities experience, we studied constantly, worked with our pediatrician, physchiatist and a naturopath to try various things spending thousands of dollars we couldn't afford. I believe that the chances of those interventions working was substantially reduced by years of damaging effects on medications.

In addition to the mood stablizer Billy Ray has been on numerous psychiatric medications to control his aggression. When he seemed to be sick constantly I worked with his pediatrician to withdraw most of the medication except the mood stabilizer, a mild ADHD med and medication for severe agression that we use only as needed .

Many of the observation, adapting and advocating methods I share in Parenting Your Complex Child came out of my attempt to maintain him on the least amount of medication while having the highest quality of life. I really believe that his life would have been better I had understood those methods when he was younger.

It is a difficult decision for parents to make faced with the difficulty of controlling behavior that could be dangerous to the child or others. Some medication may be unavoidable. However, consider your options carefully and look at other possible interventions too.

For those of you asking, Billy Ray's blood sugar continues to improve. It was in the normal range again this morning. Yes!!

Friday, October 28, 2005

When Billy Ray was little every small milestone seemed a huge victory. Raymond, his now deceased Dad, used to explain it with an example from his older daughter's life. When she was small she took her shoes and sat on her bed practicing tying them until she mastered the skill. He said he took her for granted because it was much easier for her than for Billy Ray who fights for his successes.

Billy Ray is very proud of his achievements and needs recognition for each small step. He has mastered the art of feeding his dogs twice a day. Each time he does that (with help from me or his support staff) it is important to him to locate his stepfather to get his high five and hear Larry say "good job".

When we are able to communicate to our complex children what they need to do and help them achieve some milestone the elation can be compared to a great achievement.

As I have been sharing, we are trying to get Billy Ray's blood sugar stabilized and adjust to the new diabetes diagnosis. Given his refusal to eat many kinds of foods it is the challenge we weren't prepared for. The past two days I have been talking with Brice Stanley, his primary provider ("Dr. Brice"), reading "Diabetes for Dummies", and devouring diabetic cookbooks to try to come up with alternatives to the only foods Billy Ray tolerates.

Brice told me that his increased appetite is because of his blood sugar and it will stabilize with treatment. Yesterday Billy Ray wanted to eat constantly. Attempting to find alternatives to offer him kept us hopping. I made muffins from the diabetic snack cookbook and tried some new low carb/low fat tortillas that I found in the store. He actually ate alternatives I offered him and didn't go into aggressive behavior when he couldn't have his baked potato and garlic toast for dinner.

This morning his blood sugar tested in the normal range. Yes!!!

Whatever you need to accomplish with your complex child, keep thinking communicate and adapt. It can work.

Thursday, October 27, 2005

Funny thing, I have been trying for an hour to write you a post on being frustrated because otherwise sensitive people and highly skilled professionals so often just don't get it relative to our complicated children. Twice I have tried to publish the blog only to have the internet go down and I lost it. Then I saved it as a draft before trying to publish the post only to have it turn my post into unreadable squibbly lines. Seems somehow ironic.Billy Ray has been diagnosed with diabetes this week and may also have pancreatitius, both of which could have been caused by the medication used as a mood stabilizer. I will share my thoughts on medications in an upcoming post and in Parenting Your Complex Child (AMACOM Books, Spring 2006). How do you explain to professionals who are sincerely trying to help him that there are only a few foods he will eat and he will let himself dehydrate before he will eat certain things? Yes, of course, you understand the importance of diet and you will definitely do your best despite your sense it is unrealistic.I share this frustration with you here because I want parents to know that we all experience the frustration of trying to communicate our child to others who seem clueless.I saw a young lady named Alma, who experiences Down Syndrome, in the clinic waiting room today. Her smile seemed to shine together with her copper hair and perked me up. I enjoyed chatting with her for a minute. Driving away I thought about Billy Ray when he experienced Down Syndrome before the symptoms of severe Autism began as well. I wondered would I have understood someone like Billy Ray in those days. Probably not.Our job as parents seems to involve a lot of explaining our children and educating the community about his needs. That can be a frustrating experience. We have a right to be frustrated but we don't have time to be stuck in it. There is always something to do for our child.Okay I'm frustrated but tomorrow I need to try a few more recipes from the diabetic cookbooks I bought yesterday. I actually got him to eat the biscuits from one of them instead of the garlic toast he normally demands tonight. Maybe tomorrow we'll find some new way to help Billy Ray adapt to what he needs to do.You will probably tire of hearing that word "adapt" here. One of the chapters in Parenting Your Complex Child is Communicate and Adapt. That is really the answer to our frustration. We have communicate with our child in the way he needs to receive information, adapt his life to what works best for him and his family and communicate with others what he needs.Until tomorrow,Peggy Louwwww.parentingyourcomplexchild.comwww.lighthouseparents.com

Tuesday, October 25, 2005

Whether you consider it intuition or spriritual discernment, as I do, many times parents just know when something it isn't right with their child even when there aren't obvious signs.

There have been many times with Billy Ray that the professionals involved in his care and education just didn't have the answers and neither did I. What I often refer to in my writing as bootstrap learning came to me as I turned back to my faith and began praying something I came to call the lighthouse concept. You can read it about it http://www.lighthouseparents.com/Lighthouse_Concept.html.

We have been experiencing that with Billy Ray recently. I having been asking for guidance because I knew something was up and no one seemed to come up with answers to his continuing to be sick after he should have recovered from his surgery this summer.

When I wrote you yesterday I sensed that something was up and that he was not just having a good time over the weekend. A few hours after I posted my blog I got the lab results from tests done at the end of last week. I knew that I knew Billy Ray has diabetes. I suspected it for the past few weeks. His primary medical provider has been on vacation but I pushed to get someone to order a fasting blood sugar. It was confirmed yesterday.

Diabetes might seem common and easy to treat. When your child has complex special needs, sensory, reflux and other issues make it difficult just to find something your child is willing to eat. Whenever Billy Ray has to take antibiotics, experiences constipation or is ill with something else he basically stops eating and sometimes gets dehydrated. It has been necessary to be creative in what we give him. For example, I made milkshakes with dietary supplements like Ensure and fresh fruit besides the normal contents. I started making him stuffed baked potatoes with finely ground sirloin, cheese, etc. just to get as much nutrition in him as possible.

We have been here before in terms of trying to be low cal and sugar free because one of his former behavior medications caused him to gain 60 lbs. Thus we have substituted sugar free syrup for his waffles, skim milk for whole milk, sugar free jelly for his favorite strawberry jelly, etc., etc. He stopped eating!!

It is pretty clear I am going to need the lighthouse concept (praying for guidance) for this one. It is going to be maybe the biggest challenge we have had with Billy Ray. The risk is that he will stop eating if he can't have what he wants or that he will become so aggressive because he can't have his favorites he won't be manageable at home.

It is my intention to share this challenge with you. What we do with Billy Ray may not be the answer for your child but maybe it will jumpstart your thinking with your child. The purpose of my writing in general is to help you adapt not to what works for you and your child not to get you to do things my way.

Monday, October 24, 2005

Billy Ray has been awake since 6 a.m. or so. He is noisy and bouncing while I am in a reflective mood.He had such a good weekend behaviorwise. This is a good thing but may mean something is changing. Sickness or fear can manifest itself in two ways: especially good behavior and/or aggression. When his behavior changes there is caution about why.This is more frightening because this summer he had two surgeries in 47 hours and ended up on the ventilator for 9 days in the Critical Care Unit. Knowing his past difficulty with recovering much less serious illness it seemed unlikely he would recover. However, thanks to Dr. Mike Masterangelo, Dr. Harliss and Dr. Jacobs and a lot of prayers he came back better than I ever dreamed possible.Dr. Masterangelo kept me hanging in there when I wanted to give up. Reflecting on that this morning I realize we wouldn't have had the wonderful day together that we had yesterday if it were for Dr. Mike and his helpers.I am thinking about the post I wrote a couple of days ago relative to planning for adulthood and the time I can no longer take care of Billy Ray. Because it is my birthday today I am reflecting on his care if I am not here. I am more confident because of the documentation system but there is always the nagging questions.Time for a second cup of coffee.Until tomorrow,Peggywww.parentingyourcomplexchild.comwww.lighthouseparents.com

Sunday, October 23, 2005

Before the medication reaction brought out severe Autistic symptoms in Billy Ray, we met my present husband, Larry and his large family (4 adult children and 12 grandchildren). Billy Ray enjoyed his new nieces and nephews very much and played reasonably well with them. Hans used to say "Billy Ray is a good uncle" which delighted Billy Ray greatly.After his behavior changed some of the children were frightened by him and others thought he was being naughty. I sought advice from the developmental pediatrician on how to explain his increased noise and activity to the children so that they wouldn't be frightened. Then one day when Elora, Alena, Hans and Oren were visiting from California, Larry involved Billy Ray in something else so I could sit down with them. I explained that Billy Ray could not always control his noise and movements and sometimes had a hard time answering when they talked to him. They asked incredibly mature questions which I answered as best I could.Watching the relationship change and their understanding of their uncle grow was amazing. The fear disappeared when they understanding increased. It became apparent that as parents we also need to educate others about our children. Out of that knowledge, I realized that many children and even adults in the community stare because they are frightened or they don't understand. The methods for creating a community for Billy Ray came substantially from what Elora, Alena, Hans and Oren taught me about how they perceived him.Now if we are on the phone with Elora and she hears Billy Ray being noisy, she will say "Is that Uncle Billy Ray? Let me talk to him, it will help." It calms him everytime. Most of "my nieces" read to him when they visit and he loves that.Until tomorrow,Peggy Louwww.parentingyourcomplexchild.comwww.lighthouseparents.com

Saturday, October 22, 2005

I want to say a big thank you to ABC for their recent Nightline program about Adults with Autism. The spot gave good insight into the problem of transitioning adults with disabilities from a parents' home. The two adults they featured appeared to be fairly high functioning. The transition is even more difficult for lower functioning adults.

I watched the Nightline program with delight because I realized that my book, Parenting Your Complex Child (AMACOM Books Spring 2006) addressed the problem. Suggestions are given for creating a transition plan while a child is still in school so that IEP goals can be set to help him reach as much independence as can be reasonably expected. The final chapter takes estate planning from a different prospective.

As a former professional guardian, I have many times been left to wonder what common language in wills and trusts such as "to enable my child to live in the same standard of living maintained during my lifetime". If you knew the family or if the parent is available to explain the standard of living the child maintained that is great. However, many times the parent is either deceased or suffers from conditions such as Alzheimers which prevent them from being able to communicate their wishes.

Suggestions are made for how to use some of the same documentation used for communicating with doctors, educators, case managers and other even your child herself. An abbreviated history of treatment and development in contained in the documentation system which will be helpful not only during childhood but later in transition to adulthood. I did a visual to help Billy Ray understand the process of going to a certain buffet. Since caregivers occasionally take him to the buffet without me a text box was added with his favorite foods. Placing of copy of this visual used in everyday life now in the estate planning file you maintain answers the question where does he like to go and what does he like to eat. That information can be a big deal for someone unable to communicate it to a guardian or caregiver who doesn't know him.

Friday, October 21, 2005

Prior to the medication reaction which brought out more severe Autistic symptoms Billy Ray used to be fairly independent in his bathing. After he changed he needed more assistance but I worked hard to help him have as much independence and privacy as he could.With puberty Billy Ray developed more body hair and experienced substantial folliculitis (infections in the hair follicles similar to an ingrown hair). For some people this might not be serious. In children who experience Down Syndrome and other diagnoses which affect the immune system this can be a life threatening infection if not caught early and treated.It seemed important to be more involved in Billy Ray's hygiene so that we could detect these infections immediately. I began doing more of his bath for him and a regime of skin care (you can read the details on my website at http://www.parentingyourcomplexchild.com/Skin_Care.html). This regime has substantially reduced the outbreaks and the need for antibiotics which have affected his stomach.It is always best to allow your child to have the highest degree of independence possible. In making this decision to be more involved in his hygiene the factor considered were the risk of scratching and getting the germs we all have on our skin into his blood stream (a potentially fatal situation) versus his need for total independence. Fortunately Billy Ray enjoys this extra help. Some children would resist and fight it. If that were the case further consideration would need to be applied to the decision.Until tomorrow... keep adapting,Peggywww.parentingyourcomplexchild.comwww.lighthouseparents.com

Thursday, October 20, 2005

Communication is often difficult for complex special needs child. They may have a hard time telling you when something hurts, they are confused or something is bothering them. Negative behaviors (aggression, property destruction, excessive activity or meltdowns where he throws himself on the floor refusing to move - to name a few) are one way of communicating that something isn't right.

The challenge to parents or caregivers is to figure out what is behind the behavior. Recently Billy Ray had leaking appendice and multiple other problems that were difficult to diagnose because he was already on antibiotics for a skin problem so the lab tests didn't show the infection. By the time it was discovered he was literally pulling out handfuls of my hair. Behavior can be just to get attention. On the other hand, it can be a serious communication such as this. Careful observation is necessary to figure it out. Even then it may take a while to find the cause.

No one likes to be punched or kicked. When someone you love abuses you there is a sense of betrayal or profound sadness. Accepting it as my child communicating his needs to me took more patience and prayer than I ever imagined I'd be capable of.

Meeting your child's needs reduces the negative behaviors. Understanding those needs is a challenge in itself. For Billy Ray it meant developing a method for giving him information through visuals as well as verbally, a schedule he could count on and maintaining a journal so that I could track triggers. Adapting his life to his comfort level was not a slam dunk but it made a big difference in his need to communicate by negative behavior.

Wednesday, October 19, 2005

If you would like to forward any of the posts to a friend just click on the little envelope with an arrow in it.

I wanted to let you know that we have been getting substantial spam posts. I have been deleting them as quickly as they come into my mailbox. It is possible that when I am away from the computer some may remain on the blog until I get back to delete them.

Blogger has a setting for word verification where you would have to type a group of characters before making a comment. I dislike having to type those characters so didn't want you to have to use it. If the spam continues I will turn that on.

Despite my constant reminder here, in my presentations and my writing that complex children are unqiue, the support of one parent for another is very valuable. Parents with older children have much to offer parents just starting their journey.

I love one of the mission statements by PLUK (Parents Let's Unite For Kids) out of Billings, Montana (www.pluk.org):" PLUK was founded by parents who felt strongly that parents of children with disabilities need to band together to give each other information and support. It seemed foolish for each new parent to try to learn all over again what other parents already know and would willingly share. It also seemed important for parents to lend each other support because of the healing that takes place when people who share a common problem can work together to find solutions."The sense of isolation and feeling misunderstood is reduced greatly when support from others in similar situations is present. It may be harder to get out to a support group when you have a child with complex disabilities. There are support groups online which are quite helpful too. Reading posts of others who have been there can be very comforting.I am attempting to start groups called Lighthouse Parents. Presently we are only in Oregon. Check the Lighthouse Parents website (link below) to watch for one coming to your area or better yet starting one.Until tomorrow,Peggywww.parentingyourcomplexchild.comwww.lighthouseparents.com

Tuesday, October 18, 2005

When we were exploring adoption the doctor we met with commented that we are lucky to have Kaiser Permanente because two great specialists in Down Syndrome in our state were both there. It turned out both were in our neighborhood Kaiser clinic for the first several months after we adopted Billy Ray in our home. One eventually moved to another clinic but has been involved in some measure all these years and the other was Billy Ray's pediatrician for nearly 18 years when she retired.

When Billy Ray was seven his pediatrician sent him to pediatric psychiatrist, Dr. Ron Roy. I learned so much from Dr. Ron. In fact my book would not have happened if not for Dr. Ron. He used to say "I need to know what his day is like" and he taught me to journal. Dr. Ron taught me about communicating my son to professionals who could treat him better if they could understand clearly what he experiences.

It didn't seem to be an issue while we had his longtime developmental pediatrician and Dr. Ron. However, Dr. Ron died several years before the pediatrician retired. We needed to explain Billy Ray's complicated history to new people. We had some great doctors involved following the pediatrician's departure but the challenge of explaining my son to them seemed more difficult.

The way we receive services makes explaining a child's day even more difficult. Even in an hour appointment (rare)it is difficult to explain a month of explosive or changing behavior plus physical symptoms. Explaining it in a ten minute appointment seemed impossible. I used to think constantly about what Dr. Ron had said years before about showing him what we experience. How to do that in a way that could be absorbed in the rush appointments was the challenge.

The documentation system presented in Parenting Your Complex Child came out of that challenge. When the information is communicated in a way that your doctor can absorb quickly it gives him or her more chance to help your child.

Complex children are not typical. They can stump the most skilled professional. With the added understanding you provide with the documentation system your doctor has a better chance of being able to help your child.

Monday, October 17, 2005

I wrote to someone I know who has created a wonderful list of links for parents of Autistic children. I asked her if she had found any that were specifically addressed to low functioning kids. She said that she hadn't and it appeared that most people had sort of given up on lower functioning folks. I think that is partially true. When the media looks at developmentally disabled persons they tend to do the higher end of the scale.

Corky, from the Life Goes On television series, would be considered high functioning. He was fairly independent in most areas. He needed additional help both at home and at school but he did not require total care and supervision. Sometimes people expect all disabled folks to function at those levels.

My son, Billy Ray, has been high function and now is much lower functioning. A medication reaction caused him to have a series of severe seizures. He has experienced more severe symptoms of Autism since that time. When he was little and his primary diagnosis was Down Syndrome he could take his own bath except for washing his hair, be trusted to play in his room or outside in the fenced yard independently, feed his dog and many other tasks totally independently. He could be left alone in his room while I took a bubble bath or cooked dinner.

Following the seizures his ability to do much independently changed. He needs subtantial assistance with hygiene, tasks and requires to someone to be with or near him during his waking hours. He would be referred to as low functioning because he needs assistance with most activities.

I have no problem with the designation low functioning. The problem I have with that is many people consider low functioning as no functioning. Billy Ray has to have someone near him at all times; however, he delivers Meals on Wheels to senior citizens every week (his caregiver is always there and drives the van). The people on his route really enjoy seeing him and he loves them too. He could never hold down a job but he has some functional ability to give to his world.

Persons who appear to be low functioning might be able to function at higher levels of independence and with less negative behaviors if adaptations were made to the way they received communication, their schedule, etc., etc. It is my hope that Parenting Your Complex Child will help parents to observe and track what works best for their individual child and adapt his or her life to what works best. Billy Ray is able to do much more when we discovered the ways he needed to do certain things to feel comfortable and secure.

Sunday, October 16, 2005

As I have already shared getting out of the house is not easy. Billy Ray his own agenda. He thinks in sequence not the hands on a clock. If he wants to change clothes four times before he will go out the door or is confused about what is going he may go in a meltdown (everything from bouncing up and down for several minutes or throwing himself on the floor for what seems an eternity). I will surely talk about all of that later and share the things that help and the things that make it worse. For today, I just feel the urge to share our Sunday with you .

It started out with a meltdown (agitation, throwing himself on the floor and throwing other things) after I had Billy Ray ready and was trying to get myself ready. He was watching a movie in the living room. Billy Ray requires pretty much constant supervision so I had my mirror and curling iron at the breakfast bar so I could watch him and still curl my hair. All of a sudden he decided that he wanted to change and got stuck in the process. For the next half hour or so I wondered if we should just forget about today and stay home.

We made it to church. As usual Billy Ray was thrilled to see everyone and they him. We are so lucky to have this wonderful little church who have accepted us and been there for us through several crises in the short time we have been in the area. Billy Ray really enjoys the music. Our former pastor used to say he is the only one who gets to dance in church. It isn't so much a dance as he bounces up and down to the music and claps his hands. Everyone smiles at him and seems to enjoy him. That relaxes me after mornings that start out like this one. After the music he is generally (but not always) calm enough that he can sit through service. It seem to change the day around for us.

Afterwards we went to the home of Doug and Sarah. Doug works with Billy Ray on Saturdays as a support staff. I was a bit hesitant to attend this barbecue given the events earlier in the day. I knew that there were going to be professionals who work with Sarah at the local community clinic there. I wasn't sure how Billy Ray would behave or how we would be accepted.

The weather was just right and one of the Physician Assistants had brought her wonderful Golden Retriever which Billy Ray enjoyed playing fetch with and seem to calm him. We don't take his service dog to dinners since she is a bit a problem around food so it was good to have the retriever there. I think he enjoyed seeing the lab tech that he has become so familiar with and that helped too.

Billy Ray is never able to stay long periods of time at such events but he did pretty well. We left as we realized he was going to escalate. However, as we left I was thinking to myself this has been a good day after all. A pleasant time that doesn't always turn out that way for a complex child and his family. So thanks Billy Ray for allowing us to enjoy it and thanks to Doug and Sarah as well.

Saturday, October 15, 2005

This is the title of one of the chapters in Parenting Your Complex Child because I think it is so important. One child may respond to one thing and another child responds differently. I grew frustrated reading books based on diagnosis with specific suggestions on how to do things for Billy Ray. He rarely responded well to those suggestions. He is unique. Your child whether developmentally disabled or not is an individual.

For example, when we created visuals similar to the Social Stories taught by Carol Gray, I tended to put a lot detail in them. A consultant once told me that I would lose Billy Ray's interest if they were so long and detailed. I redid all the visuals to do it "right". Believe or not, Billy Ray didn't respond to those much. He wanted the detailed ones I had done previously. I learned that there is no right way to do things with your child, you just do what works best for him or her as individuals.

It is my hope that my suggestions here, on the website or in my book will never be considered so scared they should not be modified. If they can be used to jumpstart your thinking and give you ideas on what works for your child, my goals will be met.

Friday, October 14, 2005

Sleep is something that evades us a lot of the time. A case manager once wrote in his yearly report that I didn't want to add any more medication for Billy Ray so chose to live our life sleep deprived. I called him laughing "if only there were more medication to help him sleep." We have tried many sleep medications. Some work for a few days and some not at all. Some will work longer but you have to take breaks from them half the year.

Billy Ray tends to wake up about the time I am ready to go to bed many nights. If not then he will often wake up at midnight just as I am really sleeping well. Getting woken up at that time makes it hard to function to take care of him. Thus it is easier to stay up until midnight until after he has awaken, bounced a while and gone back to sleep. It is like a little game at times I wait until I think he is asleep for sure and it is safe to go to bed. He wakes up just as I get into that hard REM sleep that it is hard to wake up and take care of him during.

Many times he just wants to know that I am there. He has a double bed and when I am desperate for sleep I can crawl in beside him. I have learned to put one arm over him and sleep part way while he yells and bounces (depending on how desperate I am for sleep). He may not go back to sleep but he won't get out of bed if I am there. Other times he wants me in his room but he wants his whole bed and will say "puter" which means he wants me to go sit at the computer. He may go back to sleep with me his room; other times he will talk the rest of the night.

We are fortunate in that Billy Ray is not really a run risk. Many complex children will try to get out of the house or get into things that hurt them in the night while his or her parents sleep. Elaborate safety measures are required. Billy Ray either yells until he gets our attention or comes to our room to get me. I haven't had to worry about him trying to get out the door. I am thankful for that.

Amazing changes in life happen when you are sleep deprived. The patience and friendliness you used to have with friends, family and even grocery clerks can be affected. It impacts appearance and many other areas of your life.

Thursday, October 13, 2005

I borrowed the subject line from her Mom’s email signature (with her permission) because it says a lot of what I want to communicate today.

As parents, we often say that we do not care what others think of our child or the way we take care of her or him. Our lives should not be dominated by what others think. At the same time as people, we long for acceptance. Our children want acceptance too and we want that for them.

Walking into a public place with my son, Billy Ray (now 22 years old), generally brings stares from others. He has many of the physical features common in people who experience Down Syndrome. Many people think of “Corky” from the popular television show “Life Goes On”. Corky was high functioning and generally well behaved. Billy Ray also experiences Autism and other diagnoses. The combination of diagnoses means that he experiences both disabilities differently than if he had one single diagnosis. He may be loud sometimes or very active or he may throw his napkin. Because he appears Down Syndrome people can be shocked by his behavior.

Over the years doctors and educators have frequently told me what is “usual”. It is my experience that Billy Ray tends to be opposite of everything that is usual. There is no “usual” for him. As Trisha’s Mom says “she’s not typical, she’s Trisha. Our kids need to be accepted for who they are as individuals with strengths and weaknesses.

Some parents get tired of fighting to bring their child out in the community and live in semi isolation only going out for what is absolutely necessary (school, doctor’s appointments, etc.). Billy Ray and I enjoy getting out a lot. We have created a smaller community within the larger world where people see Billy Ray regularly and get to know him as a person. We use the same stores, restaurants, recreational facilities, and church. This brings understanding more than if we went to different places all the time. Billy Ray is generally enjoyed greatly once he is known for who he is.

A part of parenting complex children is educating those around your child. Establishing relationships in a smaller community is easier than in the big city community. I like to think of small towns portrayed on television programs such as Little House on the Prairie. They had usually one shopkeeper, one church, one doctor, etc. Everyone got to know each other and generally accepted their differences. It works even in big cities to create a select group of friends and business contacts where your child can be known and enjoyed.

Wednesday, October 12, 2005

Blogging seems somehow strange to me. The idea that we should share with the world our deepest feelings that used to be locked in journals with keys hidden carefully from our closest family and friends is a bit unnerving.

There are secrets that should be shared and will actually help society as a whole to understand a segment of the population better. This blog is intended to share day-to-day life as the parent of a very complex special needs child.

I recently attempted to explain to my friend why we sometimes made it to church or even the grocery store with my son, Billy Ray, dressed well and freshly shaved, while I might be in jeans with my hair still wet. It occurred to me that it would be very difficult for this lady to understand what our life is like. Sharing through this blog is an attempt to make it easier to understand life with your disabled child or a disabled child you might meet in the community somewhere.

I recently wrote a book, Parenting Your Complex Child (AMACOM Books Spring 2006). By blogging I hope to supplement the information contained in the book with feelings and experiences not shared in my book.